Special Need Spotlight: Difference of Sex Development - A Family's Insight

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Written by Great Wall China Adoption / Children of All Nations on 04 Nov 2016

In adoption, many programs classify children's files as either "healthy" or "special needs." This classification has a life altering impact on each child, as it is determined from that point whether or not they will be considered "difficult to place." Often, children who are deemed "healthy" have their files prepared quickly so that they can be matched with a family at a young age. Children who have been labeled "special needs," however, may wait years and years for a family who can see them for who they are and not what their "need" is.

Below is an incredible story from one of our families who has been matched with a 13 year old girl. Like many children in this program, her file was listed with a need that is often misunderstood.

Just a few months ago, my husband, children, and I decided we were going to adopt a 13 year old girl from China. I haven’t met very many people who have adopted older children, and even though many of our close friends might have doubted our decision, we are definitely looking forward to it and the possibilities of working with her, loving her, and helping her become a successful adult. Our story is a little different than most international adoption cases. We are adopting an older child, we are adopting out of birth order, and she has been listed with a special need.

Before reading her file, we hadn’t prepared for this. My husband and I had wanted to adopt, but had not spoken about adoption for several years. One look at her file and we knew she was a perfect fit for our family. We have two other children, 10 and 8 years old, and we were very honest about what they might expect. We had several open conversations and encouraged them to look at her file with us. We read several handouts and articles about adopting out of birth order and what that might mean. We read blogs, connected with other parents, read books, and no matter what we found, we still felt she was meant to be in our family. We knew once we decided and made a commitment to apply, we were making a promise to her, and we would do all we could to make it happen.

In international adoption lists, these children often have very stigmatizing language attached to their descriptions and files. For this reason, they sometimes have a harder time being adopted. A difference of sex development, or DSD, can also be called intersex.

This is where someone’s biological development doesn’t match what someone would usually expect for a girl or a boy. Many times in our society, if someone hears the word “sex”, things suddenly become taboo, and maybe awkward. In reality, the reproductive system has as many variations as there are for hair color or eye color. It’s just another way to be human. Most people have never even heard of it. That amazes me, because I was one of those people who had never heard of it, and it’s as common as being born with red hair!

DSD is an umbrella term for a set of conditions that can range from something like difficulty with fertility to something more complex, like being born with genitals that are really more in between what we expect for a boy or a girl. This can include the reproductive system, outward appearance (phenotype), chromosomes, and hormones like testosterone or estrogen. In our society, it is easy to confuse sex (physical development) with gender or sexual attraction. Gender can be affected by hormones and other chemicals, as well as social and cultural influences. However, most kids know their gender (how they feel on the inside) between the ages 3-7. Sexual attraction is also another category. Who you are attracted to may match your gender, or it may not. We see evidence of this everywhere. Having a DSD doesn’t indicate anything about sexual attraction, and doesn’t mean there will be a gender difference. It could just be the inability to carry a biological child, and no child should be considered un-adoptable for something that affects so many of us.

I totally get it. Adopting a child with a special need can seem scary, especially if that special need seems taboo. Adopting a child with a special need you have never heard of can seem even more overwhelming. Let me assure you, there is absolutely nothing life threatening about these differences. With few exceptions, there are usually no cognitive or developmental delays, and there is a great opportunity to receive quality care here in the United States for these kids who would otherwise be left behind. There are so many great people who are intersex, and there are many support groups who can share tips and helpful information online.

Shortly after my biological daughter was born, at about two months of age, we realized something wasn’t right when giving her bath one night. She had a bulge in her abdomen that later turned out to be a hernia. While we weren’t overly concerned, it was pretty apparent it was causing her some discomfort, so we scheduled surgery to have it repaired. Handing your baby girl over to a stranger to be put under anesthesia is absolutely nerve wracking, but we trusted she was in good care. The surgery took longer than we expected and after about an hour, the doctor came out to speak with us. I still remember everything about the waiting room. The smell… the color of the carpet…the feel of the chairs… and the way the doctor couldn’t look at us in the eyes. I’ll never forget his words. Instead of ovaries, he had found immature testes and no uterus or fallopian tubes. My typical daughter, with all her typical parts, had something not so typical inside where her ovaries would have been.

After the hernia repair surgery was completed the healthcare providers ran a battery of tests. Her karyotype came back as XY. For most girls, the usual chromosome pattern includes XX chromosomes. For most boys, XY. I had seen my daughter though. Everything about her was female. I couldn’t wrap my brain around how this was even possible. While waiting for more blood work and test results, we returned home after an overnight stay in the hospital. I spent hours researching on the internet, and I came across a group called the AIS-DSD Support Group. They had a list of possible conditions that were easy to understand, resources, and a handbook. I printed everything I could and read for hours.

What I found out was that she had a DSD called complete androgen insensitivity. If she had not had the hernia, we would have not known until puberty when she didn’t have a period. She had XY chromosomes, which gave the instructions for testes to form. The testes secreted androgens (like testosterone) and because she was missing one tiny nucleotide on the X chromosome, which is comparable to one letter in a 600 volume encyclopedia, she couldn’t “read” what to do with it. Her body might as well have thought the testosterone was water. So, without the androgens working, her body went along the typical pathway of female. To be more graphically specific, she had a typical vulva, clitoris, and vagina, but it would be like the vagina of someone who had their uterus removed because the uterus didn’t develop. Her immature testes, or gonads, made a lot of testosterone, but her body created a way to turn it into estrogen, so she was able to develop just like typical girls do. Most women with CAIS identify as female, and go on to lead typical, happy healthy lives. The only health concern would be to monitor her gonads (they can develop cysts and etc.) and to take calcium (because testosterone is what hardens your bones) to avoid osteoporosis. Most women need to do this anyway.

My daughter eventually grew, and we started teaching her with the knowledge that she could understand about her development. One thing I learned through the support group is that secrecy can cause shame. There was nothing to be ashamed of, and we think she is absolutely perfect! We don’t believe people are made with mistakes. We just know everyone is different in their own way. We know that she was born without a baby pocket (a uterus), and that there are many ways to grow a family. Through the support group we met the most amazing individuals, and many with similar traits. They go on to have all the opportunities any other girl would have. The difference is, I have changed. My understanding of life has evolved. She is still the same beautiful child I had on the day of her birth, but my understanding of how her body works has finally caught up, and without her, I would be missing out on the most amazing, welcoming community I have ever been a part of.

It wasn’t long before I was finding ways to volunteer for the AIS-DSD Support Group and I learned about differences that are a little more complicated as well. I ran for the board, and then went on to be the communications coordinator and collaborative projects liaison. I helped organize conferences, develop collaborations to develop continuing medical education opportunities for pediatric specialists, and speak to others from around the globe. It is like going to a family reunion every year at our national conferences. I absolutely love it. Because I’m a teacher, I started to develop education sessions and ways to teach children with other moms. It isn’t often we find doctors that know a lot about these conditions, so we have developed a network with many specialty clinics. It has been an amazing to see the progress over the past few years. Most of the time, we have to be the experts so that we know our children are getting treatment that doesn’t complicate their feelings about themselves. It is a steep learning curve for a parent who may not have heard about these conditions before, and having each other to lean on, with the support of kind medical providers, has been so incredibly important.

My husband and I had always thought about adoption, and had even tried at one point, but because DHS is a bit broken where we are, we never received a placement. One day, when I was checking the email for the support group, there was a contact from Great Wall China Adoptions. They were seeking help from groups like ours to advocate for some harder to place children. This hit a chord with me instantly. Then I saw her face. I immediately emailed my husband and asked him to look. He knew it as well as I did that she was meant for us. This child had never been considered because of her biological difference. She is smart, talented, and tries so hard to help take care of the little ones where she is. She deserves a family, and one that can understand her condition and get her quality care. We can do that for her. She would never have this possibility in China. Many of our support group members there still have to live in secrecy. Knowing she would be aging out in a few short months just encouraged us to try harder.

It is a large possibility that Eva has never had a file written for her to be considered for adoption, and she has been in the same special needs orphanage since she was two months of age. This can be the case with many kids orphanages feel would not be considered for adoption. Without an advocate meeting her, interviewing her, asking her if she wanted to be adopted, none of this would have been possible. Another child would be living a life of shame and secrecy on top of being terminated from the social welfare system in just a few short months.

There are still many children with DSD available for adoption. Some have grants, some are younger, and some are older. The language used in translation can be difficult for anyone to read. It can be very stigmatizing and sometimes just completely wrong. It can be something as simple as having different chromosome combination for a boy and having XXY instead. It can mean hypospadias, which is really common. It can mean a little girl being exposed to a little too much testosterone in the utero and her genitals looking a little different. It may mean a little girl with no uterus or ovaries. Or it may mean there is someone who is born in between that has to grow to tell you how the feel as far as their gender someday. In those cases, we have many resources to help. These are wonderful children, and it really isn’t as scary as it sounds. There are entire groups with support just for adopting these children, and they are full of amazing parents like you.

The next time you look at a listing, consider searching for terms such as ambiguous genitalia. This term, though we don’t like to use it with people in the United States as it is not very kind, will pull up many children who are waiting that others have skimmed over. Some of these traits can be found it those with CAH (Congenital Adrenal Hyperplasia), CAIS/ PAIS (Complete or Partial Androgen Insensitivity Syndrome), Swyer Syndrome (Pure Gonadal Dysgenesis), Hypospadias, and many more. When you are reading their file, be prepared to read terms that are inaccurate from lack of funds for testing, or be shown photos that are sensitive in nature. In translation you might see wording that is stigmatizing, but we can make sure to clarify it for you.

If you want to talk or learn more, you are welcome to talk to a clinician in our support group or a parent with a child of that specific condition. What you will find is that these people know how to be accepting and understanding, the children are smart, happy, well informed, and absolutely beautiful. You can also contact the support group directly at www.aisdsd.org, or click on Intersex & DSD to learn more about some of the conditions under the DSD/ Intersex umbrella.

There are so many blessings we have received throughout this entire process, and having the opportunity to talk and write about this group of children is yet another. If it makes the difference for just one, it will have meant the world to our family and the community that serves those with differences of sex development. They are not alone, and there is someone who is waiting out there who is their forever family. They just don’t know it yet.

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